Adapting to My NJ Feeding Tube

Lying in a hospital bed, I watched as a nurse demonstrated how to use a nasojejunal tube (NJ tube) to my parents. I could tell they were nervous. They learned about an NJ tube only three weeks earlier, and everything about it seemed so foreign. My mother stumbled through the process during her first attempt. My father tried and missed an important step on his. And all I could think was, “I can’t believe this is my reality right now.”

Weeks before, I pleaded with the nurse practitioner to reconsider. Several health issues had landed me in the hospital and needing an NJ tube. I feared the procedure, however. My unique anatomy was going to make placement difficult, and nothing about putting a foreign object up my nose, down my throat, through my stomach, and into my intestines sounded like an easy feat. So I thought I could persuade her to change her mind.

But nothing else mattered the second she looked at me with concerned eyes and said, “Your organs are on the verge of failing if we don’t get nutrition into you immediately.”

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I was speechless and blindsided when she spoke those words. I knew my situation wasn’t great, but I hadn’t realized the extent of it. As it turned out, I had no other choice but to move forward with the procedure, and my fears came true.

During the procedure, I ended up aspirating and getting pneumonia, which set me back tremendously. I was already weak. But with fluid in my lungs now, I was unable to breathe on my own without BiPAP support. Nevertheless, the tube was secured in place and ready to do its job.

Over the course of a few weeks, I adjusted to my new “accessory” despite its mild discomfort. I watched the nurses care for my tube and how they carefully increased the volume output of my feeds and administered my medications. Every day, I would simply ask, “How much longer do I need this?”

I didn’t want to come home with a tube, but deep down, I knew it was inevitable. Even so, something inside of me was hoping for a different outcome, one where SMA didn’t have the upper hand. Lately, it had felt as though my health was slipping through my grasp. I was losing control. Coming home with a feeding tube felt like coming undone.

In retrospect, I was simply scared. New medical devices always feel a little threatening at first. Never mind the fact that I’m a creature of habit and completely closed off to change. (I know. I’m working on it.) Relying on a new piece of equipment to feed me felt terrifying. I didn’t think we’d manage at home after that demonstration by the nurse.

However, as I write this, I’m on my 12th week with this tube, and I’ve experienced and learned plenty. It has clogged, unclogged, splattered, leaked, gotten tangled, and already been replaced. I’ve dealt with the formula shortage, my enteral feeding pump dying, and 4 a.m. flushes. But above all else, I’ve adapted, an approach that living with SMA — and all the curveballs it throws right at my face— taught me long ago.

I don’t know how much longer I’ll have this tube or what’s next for me. But I do know that whatever comes my way, I will adapt. I will get frustrated and sad. I will question the state of my reality. I may curse this disease or feel like I’m losing my grip. But when all is said and done, I’ll look back and realize I was prepared for it all along.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.